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I was a very active young woman all of my life. Physical fitness was a big part of my life. Before I was married, I was an aerobics instructor aside from having a full-time job and I occasionally jogged on the weekends. All of my teenage years, I had many problems with my menstrual cycle. I had polycystic ovarian disease and was on birth control pills up until my husband and I decided to have children. After my first child in 1998, it took only six months for me to get rid of my post-pregnancy weight. Then, my second child came in January 2000. I had gained a lot of weight and after the baby was born, I didn't feel like my old self. I thought I had post-partum depression and the weight was not coming off at all. By Spring 2001, I weighed about 140 pounds as opposed to the 120 pounds I always used to weigh.
Summer was coming and I tried everything from Weight Watchers to shakes. I found myself gaining and not losing at all. I was even more depressed and when summer came I had stretch marks on my back and hips, black and blue marks on my knees and elbows, and I was losing my hair. I even looked and felt ugly. I was having palpitations at night and could not sleep. I thought I was obsessing over my weight. Every morning I would take the children in the jogger stroller and exercise. I knew something was wrong when I was exercising and nothing was happening, and the fact that all I wanted to do was eat!
Finally, I went to see my GYN who told me that I was suffering from post-partum depression. She gave me a script for vitamins and sent me on my way. I also went for a physical with my regular doctor who told me my pressure was a little high. He also wanted me to take some urine tests because I was also getting pains in my back. (He said the pressure was high due to the fact that I might be becoming like my mom who also has high blood pressure.) The urine tests came back saying that I had a Urinary Tract Infection. The doctor prescribed an antibiotic called Cipro and a week later I took another test. It showed that it was still there! Even after the antibiotics. I knew something was wrong. My husband thought I was crazy. He didn't think anything was wrong with me!
Finally one hot summer morning in August when I was walking the kids, I passed out. My heart was beating so fast, I couldn't breathe. I had terrible pains in my back. When I got home, I took the kids to my mother-in-law's and went to the doctor. My pressure was sky high. He told me to drive straight to the emergency room and admit myself. After being in the hospital for 2 weeks, they found I had a kidney infection and a benign adenoma on my right adrenal gland. By now, I probably was weighing about 152 pounds. My face was very round and my hair was even shorter. My brother found the Cushing's information over the internet while I was in the hospital and told me to ask my doctors about it. My doctor told me to let him do his job.
The best part of my story is this: my doctor prescribed a 24 hour urinalysis but the test results came back that is was a carcinoid tumor! When the surgeon came to see me, he said that there was no proof that the tumor was causing any of my problems so he wasn't going to remove it!! They sent me home with high blood pressure medication. I was devastated and hurt that they did not think anything was wrong. I had to persist. I went to the head surgeon of Monmouth Medical Center with my MRI who told me that in all of the years doing surgery he never came across anyone who ever had a carcinoid tumor on their adrenal gland. He recommended an endocrinologist who finally diagnosed me after one week with Cushing's Syndrome. The nurses at the hospital did not do the 24 hour urinalysis properly as well as the doctor not knowing what to look for!
After several weeks of searching for a surgeon to perform the adrenalectomy, it was done on October 28, 2001!!! And the best news of all is that it was not adrenal cancer (carcinoid), but was an adenoma!! Six weeks later I joined the Bayshore Fitness and Rehabilitation Center. I am back down to about 120 pounds. I am so grateful that I was finally diagnosed properly. I don't know if I could've lived another day knowing that that tumor was the cause of all my problems. I never felt so old, sick, depressed and ugly as much as I did when I had Cushing's. After going through steroid treatments and taking high blood pressure medication, I can honestly say I am free and clear of all Cushing's except for the fact that it haunts me from time to time like a bad dream.
Now, my doctor tells me that now my blood pressure is very low and the symptoms such as craving salt, no energy and feeling spacey is caused by a dysfunctional adrenal gland. I haven't had regular periods for 6 months. I have to admit that I have been experiencing the headaches, having a little blurred vision; supposedly sometimes your peripheral vision is affected. While driving, I almost got hit by a car coming from the right side of me, which I knew that I hadn't seen before.
I took numerous blood tests and an MRI of my pituitary to see what was going on. After a scare of possibly having Nelson's Syndrome, I am now diagnosed "Empty Sella Syndrome". This is caused from a tumor that was once there and left a hole in my gland causing it to not produce enough hormones. I have been thinking so much about it, and I wonder if the high level of steroids that were being produced from my adrenal gland caused the tumor on my pituitary gland to disappear and in fact caused the Cushing's in the first place? According to the MRI the doctor states it was caused from a tumor that was there a long time ago and disappeared.
My endocrinologist is more concerned now with replacing my hormones with a birth control pill called Demulen. Without the hormones, it can cause adrenal insufficiency. I am nervous about this whole thing. Has anyone else had this development? Do you think I should trust my doctor on this or get a second opinion? She also told me that I must get MRI's
now every year. I would appreciate hearing from anyone who has an "Empty Sella" or has been through an experience such as mine.
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